PKU CycleAmerica raises awareness of rare disorder

Mattie Caroline Yelton is just like any other eight-year-old kid.
She likes to play soccer and basketball, and does well in her classes at Dayspring Christian Academy in Blacksburg, according to her parents, Lance and Amy Yelton of Pulaski.
However, when it comes time for breakfast, lunch and dinner, Yelton is unlike any other child in Pulaski County.
Yelton was born with phenylketonuria, also known as PKU, a rare, inherited, metabolic genetic disorder that prevents the body from metabolizing an essential amino acid found in many common foods including meat, eggs, dairy, nuts, pasta, bread, fruits and vegetables. If these foods, containing the amino acid Phenylalanine, or Phe, are consumed, dangerously high levels of Phe build up in the blood stream. The build-up becomes toxic to the brain and ultimately leads to brain damage and mental retardation.
Fortunately, Yelton was diagnosed within three days of her birth and began treatment at the University of Virginia Medial Center in Charlottesville when she was just one-week old, her parents said.
As there is presently no cure for PKU, treatment for her condition includes adhering to an extremely strict diet consisting of specially-produced foods and artificial formulas to replace the nutrients the body cannot digest.
Yelton’s health can remain normal for the rest of her life, as long as she maintains the strict diet and continues to drink her formula, which gives her body just enough of the protein it needs to function and thrive, her parents explained.
Yelton’s mother, Amy, said they order specially-produced pastas, rice, cheese and other foods for Yelton, along with special ingredients to make bread for her. She noted that she can eat some vegetables and most fruits, so those are usually the only things they are able to buy for her at local grocery stores. She added that Yelton’s grandfather even buys ingredients to make “special” fudge and ice cream for her.
“It was hard when she first started school, because she wanted to go through the lunch line like all the other kids,” Yelton’s mother said. “But now she packs her lunch every day and she seems very content to do so. She pretty much knows what she can have now, but sometimes she still has to ask “Mom, can I eat this?””
Her mother also said that they have to weigh out Yelton’s food and keep track of her Phe intake.
In addition, her blood is tested each month for Phe levels, just like a diabetic would prick their finger to test their sugar levels, only they don’t get immediate results. The blood has to be sent off to a lab, which means the results are sometimes less accurate because of the week-long gap before they receive the results. She noted that in the future, home-monitoring devices (similar to the ones diabetics use to test their blood) will hopefully be available for people with PKU, which will allow for more accurate results.
Yelton’s father, Lance, said fortunately, awareness about PKU is growing. Yelton’s doctors at UVA have built up a network of PKU families, so they have had an opportunity to be in contact with other local families who have children with PKU, including one in Radford, one in Christiansburg and two in Galax.
He added that once a year, a picnic is held for PKU families in which two tables are filled only with the type of special foods that children with PKU can eat.
“The children love that, and it gives them a chance to meet with other children who have PKU,” he said.
His wife added that it makes the children feel less like they’re the only ones who have PKU.
In addition, two men, including Dick Michaux, a 64-year-old man whose granddaughter, Tia, has PKU, and a friend, Jim Burger, recently finished a 3,800 mile bicycle quest across the country called PKU CycleAmerica to raise awareness about PKU, along with funds for research and the National PKU Alliance.
This past Sunday, they passed through Radford in their eight-week journey from Pacific City, Oregon to Yorktown, Va..
The Yelton’s, along with the family of the child with PKU from Radford, had an opportunity to have lunch with Michaux and Burger during their stop in Radford.
Yelton’s father said the visit went really well, and gave them a chance to finally meet the PKU family from Radford.

As for PKU CycleAmerica, he said, “Not a lot of people know about PKU, and if they do, to them it’s just a test that their child has to have when they’re born. The whole reason for their trip was to raise awareness and funds for research to help these children who have PKU.”
For more information about PKU CycleAmerica or making a donation, visit www.pkucycleamerica.com.

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PKU CycleAmerica raises awareness of rare disorder

Mattie Caroline Yelton is just like any other eight-year-old kid.
She likes to play soccer and basketball, and does well in her classes at Dayspring Christian Academy in Blacksburg, according to her parents, Lance and Amy Yelton of Pulaski.
However, when it comes time for breakfast, lunch and dinner, Yelton is unlike any other child in Pulaski County.
Yelton was born with phenylketonuria, also known as PKU, a rare, inherited, metabolic genetic disorder that prevents the body from metabolizing an essential amino acid found in many common foods including meat, eggs, dairy, nuts, pasta, bread, fruits and vegetables. If these foods, containing the amino acid Phenylalanine, or Phe, are consumed, dangerously high levels of Phe build up in the blood stream. The build-up becomes toxic to the brain and ultimately leads to brain damage and mental retardation.
Fortunately, Yelton was diagnosed within three days of her birth and began treatment at the University of Virginia Medial Center in Charlottesville when she was just one-week old, her parents said.
As there is presently no cure for PKU, treatment for her condition includes adhering to an extremely strict diet consisting of specially-produced foods and artificial formulas to replace the nutrients the body cannot digest.
Yelton’s health can remain normal for the rest of her life, as long as she maintains the strict diet and continues to drink her formula, which gives her body just enough of the protein it needs to function and thrive, her parents explained.
Yelton’s mother, Amy, said they order specially-produced pastas, rice, cheese and other foods for Yelton, along with special ingredients to make bread for her. She noted that she can eat some vegetables and most fruits, so those are usually the only things they are able to buy for her at local grocery stores. She added that Yelton’s grandfather even buys ingredients to make “special” fudge and ice cream for her.
“It was hard when she first started school, because she wanted to go through the lunch line like all the other kids,” Yelton’s mother said. “But now she packs her lunch every day and she seems very content to do so. She pretty much knows what she can have now, but sometimes she still has to ask “Mom, can I eat this?””
Her mother also said that they have to weigh out Yelton’s food and keep track of her Phe intake.
In addition, her blood is tested each month for Phe levels, just like a diabetic would prick their finger to test their sugar levels, only they don’t get immediate results. The blood has to be sent off to a lab, which means the results are sometimes less accurate because of the week-long gap before they receive the results. She noted that in the future, home-monitoring devices (similar to the ones diabetics use to test their blood) will hopefully be available for people with PKU, which will allow for more accurate results.
Yelton’s father, Lance, said fortunately, awareness about PKU is growing. Yelton’s doctors at UVA have built up a network of PKU families, so they have had an opportunity to be in contact with other local families who have children with PKU, including one in Radford, one in Christiansburg and two in Galax.
He added that once a year, a picnic is held for PKU families in which two tables are filled only with the type of special foods that children with PKU can eat.
“The children love that, and it gives them a chance to meet with other children who have PKU,” he said.
His wife added that it makes the children feel less like they’re the only ones who have PKU.
In addition, two men, including Dick Michaux, a 64-year-old man whose granddaughter, Tia, has PKU, and a friend, Jim Burger, recently finished a 3,800 mile bicycle quest across the country called PKU CycleAmerica to raise awareness about PKU, along with funds for research and the National PKU Alliance.
This past Sunday, they passed through Radford in their eight-week journey from Pacific City, Oregon to Yorktown, Va..
The Yelton’s, along with the family of the child with PKU from Radford, had an opportunity to have lunch with Michaux and Burger during their stop in Radford.
Yelton’s father said the visit went really well, and gave them a chance to finally meet the PKU family from Radford.

As for PKU CycleAmerica, he said, “Not a lot of people know about PKU, and if they do, to them it’s just a test that their child has to have when they’re born. The whole reason for their trip was to raise awareness and funds for research to help these children who have PKU.”
For more information about PKU CycleAmerica or making a donation, visit www.pkucycleamerica.com.